Deputy
Secretary for Developmental Programs
Department
of Public Welfare
E-mail: ODPComment@state.pa.us
Re: Comments
on Proposed Service Definitions
Dear
We
appreciate the opportunity to comment on the recently issued draft service
definitions. While they are a
tremendous improvement over the draft issued last year, there remain a number of
very serious concerns. The
side-by-side comparison and the public forums where the changes were reviewed
are also much appreciated and, we hope, helpful in the review process.
First we will present several general concerns and then we will comment
by definition. As requested in your
cover letter, these comments are intended to be constructive and offer specific
modifications to the language. They
are also offered to assist ODP in fulfilling the very purpose of the
definitions; provide greater clarity for all stakeholders, ensure consistent
service delivery, promote integrated services, and strengthen compliance with
CMS guidelines and expectations.
To
establish a framework in which to operate with the new service definitions it
would be very helpful to include language that is reflective of the principles
of the MR system, Self Determination, and Everyday Lives.
We would also recommend that the introduction should state very clearly
the purpose and intent of the definitions. While
we understand that ODP cannot force counties to spend base money in any
particular way, a statement concerning the potential availability of all
services to all individuals would be quite helpful in allowing a discussion on
an individual basis when base services are, in fact needed by waiver recipients.
A specific statement concerning the availability of all waiver services
and supports to all recipients would also help address the disparity between
consumers living in licensed programs and in their own or familys home.
Home
and Community Habilitation (Unlicensed):
There
needs to be a very clear explanation of item 9 on the list of ways staff may
provide habilitation. Such examples
as seizure monitoring could assure the proper decision of providing habilitation
rather than the lesser "companion" service which will be addressed next in
these comments. When companion
service may be appropriate, the preclusion of overlapping hours removes any
possibility of companions getting to know individual they will be supporting or
the individual getting to know the companion.
We encourage the ability to overlap these two services to provide much
needed training to the companion. This
issue will also be addressed more fully in the next definition.
We appreciate the acknowledgement that an overlap with specialized
therapies or nursing will ensure consistency across settings.
On the
service code/units chart the level 4 and level 4 enhanced services, as added,
must assure that the rate setting process for this service level can support the
provision of 2:1 staffing. In the
current process, additional service units at level 3 were added to a plan when
2:1 staffing was necessary. Also,
for participant directed services, with the county set rates, there was no
differentiation in rate based upon level of service needed.
There must also be a definition (or service) added to allow for the
provision of habilitation supplies and materials.
While we
understand the movement of unlicensed residential and family living to the Home
and Community section of the definitions it seems logical (and correct) to
reflect and monitor their limited service level at an average of 30 hours per
week per home by changing their eligible
service unit to 15 minutes; the same as Home and Community Habilitation.
With the service limit per home, it seems unnecessary to have different
service descriptions for one, two and three person homes. Since they are
residential programs their ineligible costs could remain available at the half
month unit and would need the one, two or three person descriptor.
An additional specification should be added for the service units to be
limited to 6240 per year to reflect their service limit.
If additional services were to be necessary, then person would need to be
moved to a licensed program.
Companion
Services
When an
adult with cognitive disabilities needs staffing for overnight hours to assure
health and safety, as required by the waiver, it is to provide emergency
evacuation in the case of an emergency situation and to provide assessment
and support when the person may awaken due to fear or illness. These
functions hardly are met by someone unfamiliar with and to the individual
needing support and of a lesser skill level and qualification than a
habilitation worker. At best, this service would have extremely
limited usage and must, in all cases be considered very judiciously and always
on an individual basis.
No allowance
for overlap with habilitation to become familiar with individual when awake.
No ability for individual to be familiar with overnight "companion"
Training for
transfers
Training for
potentially necessary treatments (which should "trigger" need for
habilitation)
Training in
assessing the circumstances of awakened state if not emergent
Use of adaptive
equipment
Training to
place hearing aids or in special communication/assistive tech.
Reasons for
awakening and possible treatments which would be necessary.
Lack
familiarity in evacuation plan and procedures
Ability to
practice evacuations with individual
No definition
of "minimal" assistance
The
second part of the definition strikes a fear that flip-flopping throughout the
day will make the planning for and provision of either habilitation or companion
service impossible for participants who hire their own staff to keep track of
functions or pay rates if this portion of the definition is not eliminated.
The
distinction in the needs and allowable services for people living in their own
or familys home and those receiving residential habilitation 24 hours a day
when they have the same differentiation between support and supervision
establishes a NEW issue of
comparability that has not previously existed. This is not the direction
that comparability adjustments need to be taking!
Licensed
Day Services
It is
important to indicate that 1:1 staffing would come from day program rather than
Home and Community Habilitation in addition to Licensed Day Service.
There needs to be a note in this section as well as Hab section that
there may not be an overlap of these two services.
By providing the staffing as part of the day program, it assures the
training and skill level required by the day program itself to support the
individual. As ODP may be aware,
there are numerous cases of hab workers being denied access to day programs with
individuals to whom they are assigned because of lack of training or
qualifications. This causes
disruption to the individual and loss of day programming at times.
Flexible
Comprehensive Day Supports Services
We commend ODP for the addition of this service
definition but feel it is discriminatory in its exclusion of individuals "who
routinely split their day options in any predictable way".
We recommend the removal of that sentence from the first paragraph of
this definition. While you indicated
in the forum held at Vision for Equality that the intent of this service was to
make it available to all waiver recipients, by not addressing who could or
should be providing the service, it seems unclear that folks who are not already
in licensed day programs would have access nor would folks living in residential
settings, unless this service is provided by the day program. Since home and
community habilitation, one of the allowable services under this category, is
not allowed to be provided in licensed residences this also points to the need
to specify by whom and where these services may be provided.
Also, without the assurance that day program providers would accept
individuals on a part-time basis, it seems that while a good idea it will not
really be available to many.
The
inclusion of this or any other service in an ISP for which there is no provider
is quite problematic. A
consideration of the rate for this service needs to look at a rate that would
not preclude the more expensive services (i.e. job support) while not overpaying
the less expensive services (i.e. licensed day support).
An assurance needs to be provided explicitly protecting
individuals from being pressured to choose certain services in a specific
array to "fit" the budget rather than looking at the needs and desires of
the individuals while assuring health and safety.
Support Broker Service
Again, we commend ODP for the inclusion of
support brokers but feel that it should be available to all waiver
recipients. At this time, people
living in licensed residential programs have no ability to pursue self
determination. The availability of such a service could truly enable all
individuals to live an everyday life. Anyone
using flexible day supports should also have this service available to them to
assure that their needs and choices are reflected in the selection within the
listed services rather than the budget driving the selection process.
Having said that, there are also some concerns about the way this
definition is written. Care must be
given to assure that there is no overlap of responsibilities between and among
support brokers, ISO, and supports coordinators.
The current definition has some of these conflicts.
Bullet 5 seems to be an ISO responsibility and bullet 7 is a supports
coordination responsibility currently. Bullet
7 also seems to be a change in policy regarding the need for individuals
overseeing their services needing to participate in the incident management
procedures of the state. Because of
the complexity of that process, it should not be foisted upon individuals and
their families. Bullet 10, again,
seems to overlap with support coordination responsibilities.
While the limit on this service of 1040 units per
year may be sufficient, we would recommend an extension of this service
approvable by the regional
Residential Home and Community Habilitation, Licensed Homes
This definition is the most problematic in the area
of comparability of services. Unlike
Habilitation where the differentiation is made between habilitation and
companion, where supervision only is necessary, anyone receiving residential is
in need of 24 hour habilitation. This
must be addressed and corrected! Also,
where the provision of nursing requires prior authorization for individuals not
in residential programs, in residential it can be provided based on the needs of
the individual. We recommend the
adoption of this standard for everyone. Through
the rate setting process there has been discussion of "add-ons" for
residential services for individuals. There
must be a listing and definition for each of these services or modifiers.
They must be assigned service units and costs for the system to be at all
equitable.
Since the ISP process is individualized it seems
unnecessary to have a distinction of one bed, two bed, etc. homes for the
service portion of the definition. For
the ineligible costs it seems reasonable to have such distinctions.
Again, the nursing modifier seems to improve access to this service over
those individuals living in their own or familys home.
Also, curiously, this definition omits "domestic" "therapeutic"
activities contained in Home and Community Habilitation, Unlicensed and
should be added here.
Employment Services
We would recommend that the evaluation of job
finding services be reviewed quarterly rather than every six months to assure
that service is making reasonable progress toward accomplishing its goal.
Therapy Services
We would like to recommend that the provision of
therapy and the consultation and training be combined as is the current
therapeutic practice. It should also
include staff training. There needs
to be a specific allowance of the concurrent delivery of habilitation and
therapy services to allow for such training and familiarity with the process and
procedures to occur.
Nursing Services
We appreciate the
commitment of the Deputy Secretary to do a crosswalk with the Nurse Practice Act
for the services that must be provided by a registered or practical nurse.
There was also a promise that
ODP would also contact the PA Developmental Disability Nurses Network for input
and collaboration.
We would also like to recommend that the listing of
applicable conditions include a statement that that list is not exhaustive.
An explanation should be included of the codes used in the services
charts (UH, UJ, UF, TE, etc.) as well as the extension of the units from 6-8
hours. We also urge the elimination
of the prior authorization beyond the regular plan approval process.
Waiver Funded Respite Services
The definition contained in this draft includes
unlicensed family living homes. Under
the recent family living bulletin the service has been redefined as "substitute care" to allow for greater
flexibility. There needs to be
clarification that unlicensed family living providers are not eligible for both
and some consideration of the same increased flexibility being offered to
families with individuals receiving waiver services living in their homes.
Respite, Day Camp
We have a question concerning whether this service
includes the cost of the day camp or just additional support the individual
might need to provide them with the ability to participate tot heir fullest
capacity. If it is the latter, we
that this is truly habilitation rather than respite and should be provided under
that service definition. If the
difference has to do with whether the camp is a typical day camp or a special
needs day camp, that information needs to be specified in each section where day
camp is mentioned.
Home Accessibility Adaptations
We commend ODP for separating this service from
vehicle modification. We further
praise ODP for making the allocation renewable on a
10 year basis rather than just when a new home is secured.
There does need to be some clarification concerning what the starting
point of the 10 year period is for those individuals who have used some or all
of their previous allowance at the time of implementation of these definitions.
With the advent of new and improved modification possibilities,
we would suggest an allowance for an exception, perhaps through the
regional office, to access a new
modification which may not be available at this writing rather than the strict
limiting to the listed items only.
Vehicle
Accessibility Adaptations
Again,
we commend ODP on the separation of this service from home modification and the
5 year renewability of this allocation. We
do, however, have concerns that the level of funding is not sufficient to offer
an affordable and sustainable option for families. The amount limit is only
sufficient to make the modifications to a full size vehicle which is more
expensive to purchase and support (fuel, repairs, tires, etc.).
The accessibility adaptations to a minivan are more expensive at the
front end but the vehicle, itself, is less expensive and it is certainly less
expensive to support in the long run. You
have received two price quotes from another respondent showing the options from
one of the largest vendors in the Commonwealth to support this point.
Please let me know if you need additional information in this area.
As a final note to this section, there needs to be a specific addition to
this service which indicates that the allocation can be used toward the
accessibility costs of a used vehicle with the equipment previously installed.
Homemaker/Chore
Service
We would
recommend the addition of a regional exception process when the maximum is
reached and the regular caregiver is not yet able to continue providing the
service or, in the case of chore services, the weather conditions create a
situation where an extraordinary need occurs.
Support
(Medical Environment)
We
commend ODP for specifying so clearly the access to this service for people
living at home and in provider-operated settings but must question the ability
of ODP to assure the use of base monies for this service when they have
repeatedly said they have no control over base funds provided to the Counties.
Recreation/Leisure
Time Activities
We would
like to see a statement indicating that this service is available to waiver
recipients in the same way as the previously mentioned service with the same
concern noted.
Home
Rehabilitation
We would
like to see a statement indicating that this service is available to waiver
recipients in the same way as the previously mentioned service with the same
concern noted.
We hope
you will take these recommendations into account as you are making your
decisions and moving forward. We
look forward to seeing the issues we raise addressed to bring to fruition the
assurances made to CMS and commitments of ODP to the recipients of MR services
in the Commonwealth.
Respectfully
submitted,
Speaking
for Ourselves